I’m not a part of anyone’s world. And that has to be okay.

Among all the Disney VHSs that I wore out as a kid, there was one that I only remember seeing later in my childhood, loved, but never owned. My mother disliked the premise, so we never had it in the house, but seeing it on television later on was something that I felt echoed some of my struggles. One song from it, in particular: “Part of Your World” from The Little Mermaid echoed the dissonance between myself and the human world. For a long time, I believed I was less than human, because that is how I made sense of how I was treated. I was consistently excluded on merits I didn’t understand. I know now part of it is because I am a very different kind of person, comprised of many worlds but not accepted as a part of them due to only partial immersions.

I’m giving a few examples here but these are by far not the only ones. One of my favorite TV shows, that I’m sure I’ve mentioned here before, is Buffy the Vampire Slayer. Buffy, whom I very much relate to, is marked, like vampires, by having to walk two worlds (human and demon) and not be part of either but having composites of each. It seems perhaps like a silly reference, but when adapted into a less dichotomous way of thinking, it’s another media reference applicable to much of how I feel.

Trigger warning for mentions of sexual violence and associated feelings as well as other sensitive material.

Continue reading “I’m not a part of anyone’s world. And that has to be okay.”

My Endo Story, Pt II: Surgery was a success. Now, to live life.

Knowing your real worth, understanding you have a right to receive informed and compassionate care, and actively learning about and speaking up about your illness(es) and essential rights are integral to your survival.

And not just yours.

Note: Some of the links go to specific cases and while my intention is compassionate, I understand if you want the links to you or your loved ones’ cases removed and will do so at your request.

On the 25 of July, 2018, I under went a laparoscopy accompanied by excision surgery. I had a complete hysterectomy, meaning that while thankfully both ovaries were kept, everything else was removed – the tubes, cervix, and uterus. This was done because adenomyosis was confirmed, as well as endometriosis, which can cause ovarian cancer[1] in the long-term. Most ovarian cancer, the name being a misnomer (as the term for many women’s issues are due to lack of research and concern), at the root, has been shown to begin in the tubes.[2] Consensus is that taking the ovaries create unnecessary risks, and since endometriosis grows its own estrogen — something most gynecologists don’t know (and often don’t care to find out) — the ovaries have really nothing to do with its recurrence[3] – any endo (a single cell) that is left is what causes symptomatic recurrence. The lead surgeon, among the best in the world, assured me that all of the endo was almost definitely excised. I believe it. Because since the surgery, the only pain and discomfort I have had can be traced to normal post-op reactions. Up until surgery, I was having many endometriosis symptoms (not just pain) constantly — that means without interruption, not just monthly, weekly or daily — for almost a year. Prior to that year, I still was experiencing three or more symptoms at any given time since I was, at the oldest, five years old. There are a ton of symptoms that widely vary, including with which type, but given repeated sexual trauma as a toddler, it is likely that this is why I started showing symptoms prior to puberty. My case substantially supports part of Meyer’s theory over the two others in terms of the pathogenesis of the disease.[5]

 

My appendix was removed also due to endometrial involvement, and as I suspected (because I could literally feel it internally), there was a concentration of endometriosis under my left ovary.

Luckily, I did not have to have a bowel resection and only stayed one night in the hospital.

Medically cleared recovery after a surgery like this generally requires a full two months. Until mid-September, I am medically advised not to lift more than 10 lbs (much to my furbaby Oskar’s dismay – or rather mine, I guess – he tolerates being picked up but isn’t a huge fan of it), am discouraged to work my core a lot, and of course, cardio like HIIT, jumprope, and running are out of the question right now. Due to the removal of my cervix, I can’t swim, either, (which sucks, but it’s a small price to pay for my intestines not falling out or not getting infections). Thanks to medicine, I got through a clinic independent of the horror show network of doctors and hospitals I’d been previously saddled with, and I was starting to get into yoga, which I plan to return to with modifications. Thankfully, I rarely need the medicine – or any – now, although not completely (yet). I am continuing to take certain supplements, as even though it was very likely the endo depleting my vitamin B[6] and D3[7] stores, those are crucial for well-being, and it will take some time anyway for me to become nutritionally whole. I will also finish my bottle of turmeric (and may continue taking this supplement as well) and while I won’t be extremely restrictive with my diet, I am going to continue deeply limiting my refined sugar intake (a known inflammatory) and dairy. The doctor, while a lead surgeon in this field, is fallible like the rest of us, and being cautious will also slow the chance of recurrence if there is any endo left. Refined sugar is also, simply, not healthy regardless, and the benefit vs cost of dairy is arguable, not just in terms of individual health but global and environmental, too. Beef is another thing I’m not keen on consuming any more of, for both reasons as well.[8] However, as noted in the important sequel to the aforementioned article, one should also note that certain alternatives  (e.g. milk from almonds which uses a ton of water and land or milk from cashews which can easily burn – and mar – the hands of workers[9]) or strict veganism aren’t necessarily the best options, either.[10]

Continue reading “My Endo Story, Pt II: Surgery was a success. Now, to live life.”

“Freedom is what you do with what has been done to you.” – Jean-Paul Sartre

I haven’t been hiding that the disease I am trying to manage right now (endometriosis) is both horrific and all-consuming and that I feel that is in fact quite literally killing me. I have had near-death experiences before and in April I did die for a time, or at least was closest to death than I ever was, being in a coma and consciously having to make the choice to stay alive. I didn’t choose to live because I felt I had to tie up loose ends. I chose to live because amindst all of the darkness, I was able to find hope that I could get effective treatment and live a life I wanted to live. That treatment is still far away even with the help I’ve been receiving and am very grateful for, and I may not get it before my insides are scarred beyond functioning or I develop serious heart problems[1] or cancer.[2] (That being said, I know I am being extremely annoying about this, but I am literally pleading for my life and trying to get the information out there to save others’ as well.) There are a lot of things I want to do and can’t, but I’m focused right now (and trying to stay focused) on what I can do.
Blogging has been helping me deal with this along with other issues, and I intend to start vlogging about endometriosis and my case specifically very soon. I will not let my suffering be meaningless when I have learned and experienced so much that can contribute to others getting help sooner.
Part of living the life I want to live is becoming who I want to be. I have many limitations right now of many varieties, but I can choose to continue working on myself, regardless of how little time I may or may not have left. Truthfully, I think that is the most honest motivation for this blog in particular. Helping others and advocacy are both integral to my soul’s survival, a huge part of who I want to become, and while this blog does not have a big reach and has probably not bettered anyone else’s life, it has helped me greatly, I have learned better to self-advocate, and so my entries here have bettered my own life, all of which have helped equip me with better skills and ability to reach out to others more effectively elsewhere.
Recovery is not a destination but a process.
This is, indeed, truly a recovery blog for me.
That being said, there are things I talk about here that I feel I need myself to embrace more fully. We are all hypocrites in one aspect of our lives or another, whether always or in certain instances, but hypocrisy is something I have been working very hard for years to get out of my system. I know it will never be 100% out. I am human. I am fallible. But I am human, which means I also have a great capacity to change and take charge of my own behavior.

Continue reading ““Freedom is what you do with what has been done to you.” – Jean-Paul Sartre”

My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

Continue reading “My Endo Story”

All my plants are dying.

The depression is finally lifting to a tolerable degree. I believe being more honest with myself and others about my health, values, and belief system has helped tremendously. Being authentic has always been very important to me, and when I am less than completely genuine about my identity, my energies become fragmented and chaotic. I start doubting myself, and I denounce my positive traits, most of which come with their own duality of darknesses: I have wisdom because of what I have experienced, and I am loving towards people because of what I have needed to experience and didn’t. I set high standards for myself and demand better of myself because of past sins and mistakes. I create extraordinary things from extraordinary pain. One cannot exist without the other. Yin to yang, I am made of major dualities and opposing intensities, much like my own life and what I have lived through.

But all my plants are dying.

I have not watered them in so long. I have a rose plant and a glass bowl of succulents. They were both beautiful in their prime, and the rose plant even blossomed again this autumn, providing us with two wonderfully scented yellow flowers. I was always very good about watering them. I am a nurturer. It’s in my nature to take care of living entities, whether they be human, feline, or photosynthetic in nature. I have forgotten to give my furbaby Oskar his medicine routinely, as he has a respiratory infection right now. I’ve been giving him enough medicine for it to be clearing up, but I could have helped him heal much faster had I kept up the routine. This depressive episode turned me into someone I’m not.

I guess that’s the modus operandi of mental illness: They try to kill you from the inside out.

Unlike personality disorders, other mental illnesses are less embedded in one’s behavior, character, and system of living. Personality disorders often are developed in response to trauma or something occurring in utero, (e.g. serotonin syndrome), with the addition of witnessing violence at a young age, (which one might call trauma also), etc. But it’s also true that standard mental illnesses affect your behavior, as well. Depression causes fatigue, loss of interest, social withdrawal, negativity, suicidality, all sorts of things that make one a different person than they were. Alternatively, mania causes a spike in energy, impulsivity, hyperfocusing, inflated confidence, and sometimes even dangerous delusions that lead to the person’s suicide.

All my plants are dying, my cat is still sick, all of my art supplies are scattered everywhere and have been untouched for months. I haven’t been making jewelry or papercrafting. I haven’t been shooting at all. I painted two paintings since I can’t even remember when. I have always been severely depressed, and I’ve been chronically suicidal for most of my life. I live with the heaviness and sadness every day of my life. I have learned to cope with it to some degree, but sometimes it gets so heavy, it is suffocating.

I’m going to water my plants and hope they forgive me and hope that Oskar’s next doses will help him kick the infection. I hope the plants overcome the odds and Oskar heals soon. Life is resilient. I’ve learned that. If it can fight, it will fight, whether it wins or loses. Oskar will be fine soon; I know that. He’s almost completely well. But here’s to hoping the plants have a chance. I hope within the next few posts, I can tell you

“My plants are alive again.”

Taking my own advice 19 October, 2017

Just a quick update to let everyone know how “The Plan” is going. I said I’d start, and I’m proud to say I actually did. I tend to procrastinate and come up with excuses, especially when it comes to postponing recovery, because I’ve said before, the illnesses are hungry, and they ache to be fed. They’re persuasive. They’re angry. But I punched them in the face today.

Continue reading “Taking my own advice 19 October, 2017”